Second to experiencing severe chronic pain from everyday noises, the next worst part to living with hyperacusis is having people treat it like it is a psychosomatic condition.
In elementary And middle school, in addition to desentization, I was constantly receiving counseling and behavioral therapy. I worked with countless mental health professionals who thought that the problem was my anxiety and my thoughts about noise. One of the things that made me very upset was when people would purposefully avoid using the word “pain” and would instead use terms such as bother, dislike, discomfort, upsetting, stressful, etc.” Let me tell you, as a little girl sitting there with her head pounding and ears stabbing from the noises around her at that moment, being told that I was “bothered or upset” by noise was extremely insulting.
At school I have always been placed in programs for students with emotional disabilities, who often had outward acting behaviors. For the past decade I have been trying to get people to understand that my hyperacusis is a physical condition, not just a somatoform.
About a year and a half ago, new research finally started to come out to support physical mechanisms for hyperacusis with pain. Hyperacusis research scientist Paul Fuchs recently discovered Type II pain neurons in the cochlear, when the scientists previously assumed that the ear did not have pain fibers.
There have also been several other recent discoveries including how the middle ear is capable of triggering the trigeminal nerve, and how an auditory signal could potentially be processed by the pain centers of the brain.
Now at 16 I am able to find several articles in medical journals about hypothetical mechanisms for pain hyperacusis, and am in contact with several of the research scientists.
The reasons that people who report physical pain from noise are treated and assumed to be having a psychosomatic condition is because of the lack of research to definitively understand the neurophysiology of hyperacusis, and the lack of communication of recent research to clinicians.
Another reason that patients reporting noise induced pain are likely treated and assumed to be having a mental illness is because the combination of being in chronic pain from everyday noises in their environment and having people not believe, not accommodate, force them to be in physically painful situations, and have there pain dismissed would cause most people, especially a kid, to experience emotional distress. It’s like beating someone in the head with a baseball ball repeatedly and unexpectedly while telling them that the pain is from their thoughts about the situation, and then using their crying, tense body, and avoidance of you as evidence that they have a psychological problem.